4.29.2013

Quite literally in one sense! This blog will no longer be hosted by Blogger! Instead, I have created a new Word Press blog space on my website: http://www.dancingtreesmedia.com/blog/ where I have more control over the visual elements of my pages and can hopefully share my writing with more people.

This move brings my musings closer to home in many ways. When I first started writing about thyroid cancer, I felt that it was necessary to keep my real identity separate from the (sometimes excessively) emotionally raw persona who blurted out everything she experienced. In fact, I felt a huge amount of shame about my cancer, shame that I may never entirely shake off.

Survival Means Moving On, But How Far?

I am not free from my desire to separate myself from my cancer. No one wants to be defined by an ailment. When I am reminded of my cancer, it is often startling and terrible, like suddenly recalling a childhood trauma. It is a part of me that I lock away for the most part and I think that is mostly healthy. You can't live life in constant fear of death or more specifically a cancer recurrence. I want to be the person I was before, only better. After all, surviving something terrible is supposed to make you stronger, more conscientious, etc. etc.

So I can't ever entirely move on. When this started, I didn't even know what a thyroid was. And there are many other women who still have no idea what a thyroid is. Some of whom have thyroid problems that they blame on themselves or their jobs or life. Their doctors tell them to eat less and exercise more. People look down on them for being overweight and accuse them of cheating their diets. And they will struggle and feel tired and achy and cold and hate themselves and starve themselves and it will be a horrible endless cycle unless somebody tells them, yes, you have a thyroid problem! And yes, it is okay to seek treatment for that problem!

IMHO, there are not enough people out there advocating for thyroid awareness. That little butterfly-shaped organ is a HUGE deal! It controls your metabolism, hormones, and weight in ways that most doctors don't even understand. But there still exists a pervasive stigma against even suggesting you might have a thyroid or "glandular" problem.

I just started reading the bookThe Thyroid Diet Revolution by Mary J. Shomon (and will certainly reveal more insights as I read further). In her introduction, she indicates that "recent studies have conservatively estimated as many as 27 million people have a thyroid problem, the makority of them undiagnosed. [But] some experts believe that the actual number is substantially higher, more like 59 million people, and rapidly on the rise." Throughout this blog I have also quoted many statistics about thyroid cancer as the most frequently diagnosed cancer, etc. Hopefully you do not doubt that thyroid issues are widespread. (If so, leave me a comment and I'll find more sources for you!)

But claims to thyroid or gland problems are still a running joke in this society, seen as an excuse fat people use to get fatter. Doctors still laugh in the face of patients who are befuddled by their weight gain and fatigue. And while I disagree with Shomon's assertion that there is less of a stigma associated with thyroid cancer than with other cancers (hello "good cancer"), I have seen firsthand the unwillingness for women to even consider a thyroid condition as the source of their aliments.

In fact, while I may be a bit hyper-vigilant in the aftermath of my own diagnosis, when I have asked certain of my friends to please for godssake check their necks, I have been dismissed! My mother, while fully aware of the thyroid problems in her family, insisted for years that she was the "only one without a thyroid problem," only to get diagnosed with Hashimoto's Disease recently! My aunts were so ashamed of their thyroid cancers, I only found out after my own diagnosis! My mother-in-law, a doctor, says that after my tests came back positive, she has been more vigilant in looking for thyroid nodules and has had at least three more patients diagnosed with thyca!

When to Dump Your Doctor (Even If They Are an Endocrinologist)

I dumped my doctor immediately after being diagnosed. My mother-in-law found my nodules through a routine physical, and the fact that MY doctor had failed to find these things felt like a betrayal! Especially when I had been to her 6 months before, asking to be tested for thyroid problems! Those tests came back negative even though I had a 3cm tumor growing on my thyroid. Even though I have a family history of Hashimoto's and thyca.

This may not have been entirely fair since she may not have been aware of the change in TSH standards and she knew very little about my family history (because I knew very little about it).

Shomon points out that it is very difficult to convince a doctor to even test you for thyroid problems and even if you get that far, you might not get help, because "HMOs and insurers want to control costs, so they don't agree to pay for tests. Doctors don't agree on what tests to run or how interpret them, creating a situation in which you can take the same blood test result and show it to two different doctors in the same practice, and one will say you have a thyroid condition and prescribe medication, while the other one will say you're fine." Even if you're not.

If there is even a CHANCE your doctor is not taking you or your health or your feelings and intuitions and self-knowledge about your healthy seriously, dump them. I am in this situation with my current endocrinologist. Unfortunately, as I am uninsured (self-employed) and even a meet-your-new-doctor visit costs $300 out of pocket, I am stuck with him for a while. So I am basically wishing better luck for you.

You should dump your doctor if:

1. They don't give you regular neck checks. This is standard. You shouldn't have to ask for one, but if you really like your doctor and they are not hip, tell them you want it to be a part of your physicals from now on. This is the first and foremost way to detect thyroid cancer/Hashimoto's, and early detection is absolutely essential! Shomon includes two pages of diagnostic procedures your doctor should be doing, which I am attaching to the bottom of this blog (excerpted from a Google Books preview, so not exactly stolen). I was confused when my mother-in-law started feeling my neck as part of her physical, because she was the first doctor to do this! And I can only wonder how long I went undiagnosed....

2. They won't give you a thyroid test. No ifs, ands or buts. If your doctor cares so little for your sense of well-being and has so little respect for your opinion, that they will not order a test that should probably be a standard for women over twenty anyway, dump them! Immediately! And be sure to tell them why. Maybe they'll change their tune after a few patients walk out.

3. They laugh at you. Self-explanatory really.4. They don't believe you. If your doctor doesn't trust you, why on earth should you trust them? At my last appointment, I started to tell my endo how I had been feeling lately, not for kicks, not because I'm a lonely woman who likes to talk for no reason, but because I though it might be pertinent to my biannual examination! But instead of listening and taking notes, as I have had many good doctors do (mostly female), he interrupted me and then said "We don't deal in feelings here. We deal in TSH levels. Science." In a rather condescending tone. Well that shut me right up. It shut me up so well that I forgot to ask (or maybe could not get up the guts to ask) the questions I had been gathering for 6 months. What is the point of paying $300 for an appointment if I am too intimidated to inquire after my own health?

Shomon quotes so many examples of woman and thyroid problem patients being dismissed by doctors, it sounds like an epidemic! And some of them say far worse things, basically calling patients liars to their faces. Women are more likely to die from heart attacks than men for the very reason that their doctors don't listen to them. There is a long misogynistic history of dismissing women as histrionic and overly emotional. Don't let your health get sacrificed to sexism!

5. They don't return your phone calls. First of all, you should never, NEVER, have to call repeatedly for test results. I have been waiting over a month for my TSH results. I even put off calling in my prescription as long as I could, convinced that the doctor's nurse (since I NEVER get to talk to the doctor directly outside an appointment) would call me back. I was told I would be called in four days. Still nothing....

My main point is NEVER assume that 1) your doctor knows enough general medicine to keep you healthy or 2) that they have your best interests at heart. I would like to believe that they do, but history and experience have proven otherwise. Be good to yourself and find a doctor who cares and is willing to learn.

Chances are, you have health insurance, and if you have health insurance, you have options. Hopefully there is not only ONE endocrinologist in town. So choose your doctors carefully. Have respect for yourself, your body, and don't be afraid to ask questions or to tell a health professional there is something wrong. Trust yourself, get treated and move on!

Visitors

About Me

About

Just Cancer is a blog by Mary Noon, writer, artist, and lifelong bibliophile, who was diagnosed with Papillary Thyroid Carcinoma in May 2011. This personal account of her experiences with thyroid cancer exists so that others may know what to expect. She also hopes to raise awareness of what is now the fastest increasing cancer in the U.S.